TSH 0.88 - but could I be Hypothyroid? Please help !!!!

Hope somebody can help me ... I'm going through hell.  I've been losing my hair gradually over the last three years.  Around December 2015 , it started to get REALLY bad and my hairline All around my head took a real hit. I'd seen several trichologists who kept on telling me that my hairloss was a symptom of low ferritin . So I took steps to raise my ferritin to 90 as advised - this , I was told , would get my hair growing thick again.  . In March 2015 , my ferritin was 29.  By July 2015 it was 60  and by January 2016 it was up to 83.  When my ferritin was tested in January , my thyroid (TSH) was also checked and was 0.88.   I was told this was normal.  Off I went , thinking all I had to worry about was getting my hair back. However....it just kept getting thinner. It has destroyed my life . I'm 38 years old , and always loved getting glommed up and going out. Now I just hide in my house crying.  Anyway -  around the 5th Feb , I noticed a lump in my neck. I was told it was a thyroid nodule.  At the same time , I developed GERD , and was very distressed by it all. When I went to hospital to have a fine needle aspiration on the lump , I was told that there was another nodule deeper in my neck on the side of the thyroid. They tried to get the needle into it to draw fluid ( it was awful) and couldn't get anything out . I was told a week later that it looked too small on the scan to be anything serious so they discharged me. The lump in the front disappeared , and I'm not sure what happened to the lump that was further inside ? However , I continue to have strange symptoms.  Tingling in hands and arms ( sometimes in face , legs, feet). Waking with small bruises in places where I know I haven't injured myself , sensitivity to cold , fatigue , Dry , rubbery skin on face and body , extreme thinning of hair on scalp , diminished pubic hair , and loss of arm hair , periods much heavier , digestive problems, sore throat , dry mouth,  fluttering in ears , ..... I'm convinced I have a thyroid problem .  I'm so sick of being told that my thyroid is okay when my gut feeling is that it's not .  I am wanting to pay a private endocrinologist ( Dr Trainer , Manchester) because I want my hair back badly and I don't want some GP throwing thyroxine at me .... Has anybody ever had an experience like this ? Could there be a problem despite what my TSH levels say ??? 

21 Replies

  • Hi Vikstar77,

    Have you had your Vitamin B12 and Folate checked? 


  • Yes .. All are fine. Full bloodwork was done and all okay ? 

  • I did not have the t3 or t4 tests done though ..

  • Yes - all checked and fine x 

  • If you could have both your Free T4 and Free T3 tests done it might show both are low. However, doctors trained before the blood tests were introduced would have given you a trial of thyroid hormones according to your symptoms.

    Nowadays it appears they will only prescribe in the UK if TSH reaches 10.  Some, with symptoms will do so around 5+ but not lower. 

    Jose651's suggestion about your B12 level might also be the reason. 

    Our vitamins minerals have to be at an optimum.  Ask GP for Thyroid Antibodies,  B12, Vit D, iron, ferritin and folate as well as the Free T4 and FT3. The lab usually don't do these if TSH is in range.

    If your GP wont test the Frees, you can get them privately with a small discount.

    I, myself, have lost hair three years in a row, completely bald on one occasion and bald spots on the other occasions. I had to buy a wig. Mine was Alopecia Areata but hair loss can have a few reasons. Blue Horizon do 'pin prick' blood tests.


    Some people's TSH doesn't rise high enough but the do have symptoms:-

    On the left-hand side of the above link you will see more info, i.e. types of thyroid gland problems, and clinical symptoms.

    A blood test for your thyroid hormones should be the earliest possible and con't eat until after the test  (you can drink water). Thyroid hormones should be taken afterwards.

  • Hi there

    I (luckily) managed to find a GP that will treat based on off bottom of scale t3 and t4 with a tsh of 1.2. They are out there!

    This was after 7 years of he'll with my previous GP practice. My suggestion would be to print off the NICE guidelines and point them at the secondary hypo section, ask for T3 and t4 to be checked then ask for a trial of 25 mcg of levothyroxine. This is what they did with me. When I got to 75 mcg without any real change to my T4 and tsh levels I got a confirmed diagnosis

    BTW - you said you don't want thyroxine; it works really well for around 85 per cent of patients so unsure why you don't want it. I have di02 gene snp so need ndt/t3 to be well but this is not true of the majority! Do get them to prescribe levothyroxine first; it made me feel somewhat better but didn't get me all the way back to health

  • tuppenny where did you get the di02 gene snp result ftrom? I have just done a gene test with 23 and me, I have 58 mutation, it goes far  beyond straightforward dthyroid , but I don't kbow about the dio2 gene, its all pay out all the time to try to get to th ebottom  of things..

  • Here you are Pettals.


  • Hi - sorry not been on for a few days. I ordered the test off thyroid UK website 

  • Is there a secondary hypothyroid section ? 

  • This is info which might help:-


  • Yes


    Clearly states that TSH will be low/normal and FT4 low to diagnose

  • Make sure you get all nutrients from food as well as possible. Take a multivitamin as well. There are multiple illnesses with these symptoms. I would recommend going back to the doctor or another one if the first one is not good enough. Get a referral to someone more specialized.

  • Sorry ... I probably should have said ... My vits and minerals are all fine. I take multivits religiously . I also take evening primrose oil . I have taken supplements for over a year and my bloodwork shows no sign of deficiency in anything .  My doctors kept saying my thyroid is fine based on TSH.  I asked if the nodules could have changed this over the course of 6 weeks . I was told no. I asked if I was peri menopausal , I was told no. I'm now going to another doctor , but I'm in no position to be passed around or ignored again . My hairloss is not hereditary or androgenic ( I'm seeing a Trichologist with 30 years experience and she is adamant that the loss is ferritin based) now that my ferritin is at optimum levels , I'm supposed to wait 6 months before it reaches my hair , however , my hair is getting worse . All around the hairline , nape of neck , etc ...   This all seemed to coincide with the lump appearing in my thyroid . Now I'm feeling like I'm going bald ... Week by week it gets worse .  Then my Pubic hair starts going .... It's horrifying !  My Trichologist keeps saying just focus on ferritin and it will get better , but how am I supposed to ignore these other symptoms ?!  The tingling alone drives me mad ... My skin is so dull and rubbery and the reflux is making my life hell . Something is wrong hormonally . I'm hearing very good things about Annice Mukerjhee at Spire Healthcare ... She's had some very good reviews so I'm thinking of paying privately to see her ? She's apparently very caring and a very good listener - and I think a private endo is the way forward for me ? 

  • Who said your levels were 'fine'? Your doctor? Was your B12 1000? If not, it's not 'fine'. Did you get a print out of your results? If so, post them here and we'll tell you if they're optimal. It's your legal right to have a copy.

    If you have nutritional deficiencies, then multivits just aren't going to help. They Don't contain enough of anything to treat a true deficiency. They also contain things you Don't need if you're hypo... I could go on and on about multivits, but I'll spare you that. lol

    Your doctor knows nothing about nutrition - or thyroid come to that - he'll say every thing is 'fine' if it's just 'in range'. But 'optimal' and 'in range' are not the same thing.  

    Thèse are the basic tests you need :






    vit d

    vit B12



    All those need to be optimal, not just 'in range', and not just the TSH. The TSH doesn't tell you very much at all. However, if all those are optimal - which I sincerely doubt - then you need to start looking elsewhere. But get all those done first. :)  

  • Hi ,, I will get these done again - I had them done last July and was told my b12 levels were nearing too high .. But I thought nothing of it ?    This January I had a lot of bloods done but I suppose I'll get my new doctor to really go through the vitamin levels .  Strangely , my skin looked amazing in November just gone ... My hair was thickening up too ... This spate of issues has really kicked off over the past twelve weeks ....  I was feeling like my hair was starting to get better , then WHAM, along with the reflux , tingling , bad skin, rapid hairloss all over body , ear fluttering , tiredness , weight gain disproportionate to anything I'm eating , heavy periods , coldness .... It's like it all emerged around the time I found nodules . Thank god for this forum.... I'm so depressed and felt so alone with all of this . I'm a very appearance conscious person and now I look terrible . I start a new job soon and I'm so traumatised by the hairloss I'm scared I'll be crying in the street or at work . I can't even find a wig because they look awful if they don't have a long enough fringe . plus real hair ones are way out of my budget . Synthetics just don't last.  I would give anything to correct whatever is causing this . My hair specialist has had over thirty years in the field , but I think she is over simplifying my problem .    I know my body and something is not right .....   Thank you for your advice ... It means a lot . I just want myself back 😔

  • Yes, of course. We all do!

    There's not such thing as too high B12. The range in the UK is just stupid, so you really need it over the top. Any excess is just peed out as it's water soluble, you can't over-dose on it, and it's very doubtful you would just taking a multivit!

    The first step to getting well is remembering to ask for a print-out of any labs you have done. Taking a doctors word for 'it's fine' just isn't going to cut it! 

  • Tingling can be a sign of peripheral neuropathy (nerve damage), which can be a symptom of vitamin B12 deficiency.  It was the first sign I had that my levels were dangerously low. It seems to go hand in hand with Hashimotos.  Injections are a quick fix but sublingual tablets or drops are good too.  Take at least 1000mg a day.

  • Hello (((vikstar77)))

    This is a repost. It doesn't promise a miracle, just a way for you to come through this. My very best to you and anyone else hoping to find answers to this, at what I know from experience is a difficult time.

    My mum lost her hair whilst she was having chemotherapy and when it didn't grow back and she was left with very diffuse loss it was pretty awful for her. I know she had an issue with her thyroid but by that time she'd had so much surgery for recurrent cancer she told the medic to eff off when he wanted to leave her with what he described as a 'necklace' scar to 'put it right'. Go, mama. When she died ten years ago, my own hairloss took off. I had an awful couple of months just watching it fall and chasing charlatan after charlatan on line who promised results for hairloss. At that time, only with the benefit of hindsight, my TSH was 2.97 and rose over the ensuing years. I'm now officially hypo, I know I'm Hashis and whilst my GP thinks I take T4 I self medicate NDT and T3.

    Not all of us thyroid folk go through this. You may find kindred spirits among the people on heralopecia.com  sometimes it's good just to know you're not alone. Mine is androgenetic alopecia, a matching pair auto immune disease to go with Hashis, two for the price of one what a lucky bird.

    I couldn't wait for my hair to grow and doubted that it would. It was one of the most challenging times of my life to continue working with my hair falling out and my scalp increasingly visible. Again with hindsight, the stress of losing my lovely Ma probably kicked off a Hashi's episode - I thought the constant lump in my throat was grief. I didn't want to wear turbans, seeing them as uniquely for cancer survivors. Now, I wear them often when I'm off duty, but that's a whole other story. At the time I had a turbo charged position involving steering people through professional qualifications. I went to see Chris Watts in Kent. There's an article here about her salon trichocare.co.uk/news/their...

    and she is on facebook but that seems more to do with conventional hairdressing. The website gives the stories of many with various types of hairloss including before and after photographs.

    I have a hairpiece about the same size as a boy's yarmulke, which I tape on to my shaved head, where the hairloss in worse.It is undetectable and the tape ensures I'm not worried on a windy day. Some might say that I gave up; I say I got my life back and it enabled me to continue in a role I loved until ready to wave it goodbye.

    Continuing to work in a role I also love as a public speaker of sorts, I've never looked back. There are many, many mistakes people make when biting the bullet and choosing a wig, from trying to replicate their own hair to not having a wig cut in. They don't have to be majorly expensive to look good.simplywigs.co.uk/ You can buy eyebrows on here and they're good - or have your brows tatooed on. Don't let alopecia win ! Take charge !

    What you're going through can only truly be understood by another with significant hairloss. Women advised that they have cancer are more frightened of losing their hair than they are of dying - it's such a brutal thing to lose the hair on your head. Sometimes it's easier on your pysche to deal with it and move on, than fret endlessly, not want to leave the safety of your home, count the hairs on your comb and sit sobbing wretchedly, spending money on rubbish supplements and hair treatments, all of which I've done.

    Losing hair is a tough time but hopefully lots to think about. You are not helpless in this, unless you let alopecia win.

  • I have secondary hypothyroidism. Google it. That is whereby my TSH is normal but without medication my T4 is low.  This is rare and a piturity dis order rather than a thyroid disorder. I got to the bottom of it via a trichologist. You need to test your T3 and 4. 

  • Vitamin B12 is normally good to take and normally with good results, but personally I spent 3 weeks very ill after taking it for 4 days at the amount of 1000 mcg for two days and 500mcg for three days. Right after that I spent three days in the hospital as I had pretty much all the side effects that it can give you, which can also be symptoms of a lot of other things. The biggest symptoms was that my balance was very unstable, my whole left side was numb and I was extremely dizzy (could hardly walk). I prefer to take it from food only. This is quite unusual though, but just in case. I'm super sensitive to supplements.

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